Faculty Bibliography

BACKGROUND:Homebound older adults are medically complex and often have difficulty accessing outpatient medical care. Home-based primary care (HBPC) may improve care and outcomes for this population but data from randomized trials of HBPC in the United States are limited. METHODS:We conducted a randomized controlled trial of HBPC versus office-based primary care for adults ages ≥65 years who reported ≥1 hospitalization in the prior 12 months and met the Medicare definition of homebound. HBPC was provided by teams consisting of a physician, nurse practitioner, nurse, and social worker. Data were collected at baseline, 6- and 12-months. Outcomes were quality of life, symptoms, satisfaction with care, hospitalizations, and emergency department (ED) visits. Recruitment was terminated early because more deaths were observed for intervention patients. RESULTS:The study enrolled 229 patients, 65.4% of planned recruitment. The mean age was 82 (9.0) years and 72.3% had dementia. Of those assigned to HBPC, 34.2% never received it. Intervention patients had greater satisfaction with care than controls (2.26, 95% CI 1.46-3.06, p < 0.0001; effect size 0.74) and lower hospitalization rates (-17.9%, 95% CI -31.0% to -1.0%; p = 0.001; number needed to treat 6, 95% CI 3-100). There were no significant differences in quality of life (1.25, 95% CI -0.39-2.89, p = 0.13), symptom burden (-1.92, 95% CI -5.22-1.37, p = 0.25) or ED visits (1.2%, 95% CI -10.5%-12.4%; p = 0.87). There were 24 (21.1%) deaths among intervention patients and 12 (10.7%) among controls (p < 0.0001). CONCLUSION/CONCLUSIONS:HBPC was associated with greater satisfaction with care and lower hospitalization rates but also more deaths compared to office-based primary care. Additional research is needed to understand the nature of the higher death rate for HBPC patients, as well as to determine the effects of HBPC on quality of life and symptom burden given the trial's early termination.

BACKGROUND:Homebound older adults have heightened risks for isolation and negative health consequences, but it is unclear how COVID-19 has impacted them. We examine social contact and mood symptoms among previously homebound older adults during the COVID-19 pandemic. DESIGN/SETTING:Cross-sectional analysis using data from the National Health and Aging Trends Study (NHATS), a nationally-representative longitudinal study of aging in the USA. PARTICIPANTS:A total of 3,112 community-dwelling older adults in 2019 who completed the COVID-19 survey in the summer/fall of 2020. MEASUREMENTS:Homebound status was defined via self-report as rarely/never leaving home or leaving the house with difficulty or help in the prior month. We measured limited social contact during COVID-19 (in-person, telephone, video or email contacts <once/week), as well as loneliness, anxiety, and depression. RESULTS:Among homebound older adults, 13.2% experienced limited social contact during COVID-19 vs. 6.5% of the non-homebound. Differences in social contact were greatest for contacts via email/text/social media: 54.9% of the homebound used this <once/week vs. 28.4% of the non-homebound. In adjusted analyses of those without limited social contact prior to the pandemic, the homebound had higher but not significantly different odds (OR 1.83; 95% CI 0.95-3.52) of limited social contact during COVID-19, with increased risk among the older individuals, those with dementia, and those in assisted living facilities. Of the homebound, 13.2% felt lonely every/most days during the pandemic vs. 7.7% of non-homebound older adults. Homebound and non-homebound older adults reported similar rates of increased loneliness, anxiety, or depression during COVID-19. Fewer homebound older adults learned a new technology during the pandemic (16.3%) vs. non-homebound older adults (30.4%). DISCUSSION:Isolation among homebound older adults increased during COVID-19, partially due to differences in technology use. We must ensure that homebound persons have the connection and care they need including new technologies for communication during and beyond COVID-19.

CONTEXT:Hospice aides provide essential direct care to hospice patients, yet there is minimal research examining hospice aide visits. OBJECTIVES:describe the prevalence and frequency of hospice aide visits, and 2) evaluate patient, community, and hospice characteristics associated with these visits. METHODS:Longitudinal cohort study of Medicare Current Beneficiary Survey (MCBS) participants who died between 2010-2018 and received routine hospice care in the 6 months prior to death (n = 674). We characterized prevalence and frequency of hospice aide visits over time and used generalized linear modelling to identify factors associated with visits. RESULTS:64% of hospice enrollees received hospice aide visits and average visit frequency (1.3 per week) remained stable throughout enrollment. The only patient characteristic associated with receipt of hospice aide visits was primary hospice diagnosis (respiratory diagnosis vs. dementia: OR 0.372, P = 0.040). Those living in community-based residential housing and those cared for by hospices with aides employed as staff were more likely to receive any hospice aide visits (OR 2.331, P = 0.047 and OR 4.612, P = 0.002, respectively.) CONCLUSION: Hospice aide visits are a common component of hospice care, but visit frequency does not increase as death approaches. Receipt of hospice aide visits was primarily associated with community and hospice agency (rather than patient) characteristics. Future work is needed to ensure that hospice aides are integrated in the hospice interdisciplinary team and that access to hospice aide visits is meaningfully driven by patient and family needs, rather than the practice norms and business models of individual hospice agencies.

COVID-19 has demonstrated the essential role of home care services in supporting community-dwelling older and disabled individuals through a public health emergency. As the pandemic overwhelmed hospitals and nursing homes, home care helped individuals remain in the community and recover from COVID-19 at home. Yet unlike many institutional providers, home care agencies were often disconnected from broader public health disaster planning efforts and struggled to access basic resources, jeopardizing the workers who provide this care and the medically complex and often marginalized patients they support. The exclusion of home care from the broader COVID-19 emergency response underscores how the home care industry operates apart from the traditional health care infrastructure, even as its workers provide essential long-term care services. This special article (1) describes the experiences of home health care workers and their agencies during COVID-19 by summarizing existing empiric research; (2) reflects on how these experiences were shaped and exacerbated by longstanding challenges in the home care industry; and (3) identifies implications for future disaster preparedness policies and practice to better serve this workforce, the home care industry, and those for whom they care.

INTRODUCTION:Seriously ill people with dementia living at home may be particularly vulnerable to disruptions in their care during times of crisis. The study sought to describe care experiences of those receiving home-based primary care in New York City during the COVID-19 pandemic and compare the experiences of people with and without dementia. METHODS:We conducted a retrospective review of all electronic medical record notes between March 1, 2020 and December 30, 2020 among a sample of home-based primary care recipients (n = 228), including all deaths that occurred in the spring of 2020. Drawing from administrative records and using an abstraction tool that included both structured (e.g., documented COVID-19 exposure) and unstructured (e.g., text passage describing caregiver burden) data, we identified salient COVID-19 related care experiences and identified and categorized major disruptions in care. RESULTS:Both people with and without dementia experienced significant disruptions of paid caregiving, family caregiving, and home-based services during the COVID-19 pandemic. While the paid caregivers of people with dementia reported more burden to the home-based primary care team as compared to people without dementia, we found little evidence of differences in quantity or type of COVID-19 related disruptions relative to dementia status. DISCUSSION:While those with dementia have distinct care needs, our findings emphasize the way that dementia may be one piece of a larger clinical picture of serious illness. In order to support all patients with high care needs in crisis, we need to understand the interdependence of clinical care, long-term care, and family caregiving support for older adults and view dementia within the larger context of serious illness and care need.

As the locus of long-term care in the United States shifts from institutions to the community, paid caregivers (i.e., home health aides, personal care attendants) are providing more hands-on care to persons with dementia living at home. Yet, little is known about how family caregivers engage with paid caregivers. We conducted in-depth, semi-structured interviews (n = 15) with family caregivers, of persons living at home with severe dementia, and enriched our findings with data from a second cohort of family caregivers of persons with dementia (n = 9). Whether paid caregivers were hired privately or employed via a Medicaid-funded agency, family caregivers reported that they needed to manage paid caregivers in the home. Core management tasks were day-to-day monitoring and relationship building with family caregivers; training paid caregivers and coordinating care with homecare agencies was also described. In order to support family caregivers of individuals with dementia at home, it is important consider their preferences and skills in order to effectively manage paid caregivers. Support of efforts to build a high-quality paid caregiving workforce has the potential to improve not only care delivered to persons with dementia, but the experiences of their family caregivers.

OBJECTIVES:Homebound persons living with dementia may have increased difficulty accessing needed care in the community. This study identifies factors associated with becoming homebound among a national sample of Medicare beneficiaries with newly identified dementia. DESIGN:Prospective cohort analysis. SETTING AND PARTICIPANTS:We used the National Health and Aging Trends Study (NHATS) 2011-2018 to identify community-dwelling older adults at the time of a new dementia diagnosis (n = 939). Dementia status was determined based on cognitive testing and self and proxy reporting. METHODS:We compared characteristics of homebound (ie, those who never or rarely left home) and non-homebound participants at the time of dementia identification. Among non-homebound participants, we used a Fine-Gray subdistribution hazard model to identify factors associated with becoming homebound over follow-up (median follow-up 4 years), accounting for competing risks of death and moving to a nursing home. RESULTS:20% of individuals with newly identified dementia were homebound and this group was more functionally impaired, medically complex, and socioeconomically disadvantaged as compared to the non-homebound. Over time, depression [subhazard ratio (SHR) 2.19, 95% CI 1.36, 3.54], living in an assisted living facility (SHR 2.60, 95% CI 1.35, 4.97), and Hispanic ethnicity (SHR 1.91, 95% CI 1.05, 3.47) were associated with becoming homebound. CONCLUSIONS AND IMPLICATIONS:Most adults are not homebound at the time of dementia diagnosis. Identifying and addressing modifiable factors like depression may slow progression to homebound status and enable persons living with dementia to access needed care in the community. In order to accommodate diverse individual and family preferences for long-term care, robust systems of home-based clinical and long-term care are necessary for those who do become homebound.

OBJECTIVES:Paid caregivers (e.g., home health aides) often work with family caregivers to support persons living with dementia at home. We identify (a) unique trajectories of paid and family caregiving support among persons living with dementia with high care needs and (b) factors associated with these trajectories. METHODS:We used group-based multiple trajectory modeling to identify distinct trajectories of paid and family caregiving hours among National Health and Aging Trends Study respondents with dementia who died or moved to a nursing home (n = 334, mean follow-up 5.5 years). We examined differences between trajectory groups and identified factors associated with group membership using generalized estimating equation modeling. RESULTS:A 3-group model best fit our data: (a) "low/stable care" (61.3% of respondents) with stable, low/no paid care and moderate family care, (b) "increasing paid care" with increasing, moderate paid and family care, and (c) "high family care" with increasing, high family care and stable, low paid care. While both the "increasing paid care" and "high family care" groups were more functionally impaired than the "low/stable care" group, the "high family care" group was also more likely to be non-White and experience multiple medical comorbidities, depression, and social isolation. DISCUSSION:Study findings highlight the importance of considering unique arrangements in dementia care. Receipt of paid care was not only determined by patient care needs. Creating equitable access to paid care may be a particularly important way to support both persons living with dementia and their family caregivers as care needs grow.

BACKGROUND:Over the past decade, medical care has shifted from institutions into home settings-particularly among persons with dementia. Yet it is unknown how home-based clinical services currently support persons with dementia, and what factors shape access. METHODS:Using the National Health and Aging Trends Study linked to Medicare claims 2012-2017, we identified 6664 community-dwelling adults age ≥ 70 years enrolled in fee-for-service Medicare. Annual assessment of dementia status was determined via self-report, cognitive interview, and/or proxy assessment. Receipt of four types of home-based clinical care (home-based medical care (HBMC) (i.e., nurse practitioner, physician, or physician assistant visits), skilled home health care (SHHC), podiatry visits, and other types of home-based clinical services (e.g., behavioral health)) was assessed annually. We compared age-adjusted rates of home-based clinical care by dementia status and determined sociodemographic, health, and environmental characteristics associated with utilization of home-based clinical care among persons with dementia. RESULTS:Nearly half (44.4%) of persons with dementia received any home-based clinical care annually compared to only 14.4% of those without dementia. Persons with dementia received substantially more of each type of home-based clinical care than those without dementia including a 5-fold increased use of HBMC (95% CI = 3.8-6.2) and double the use of SHHC (95% CI = 2.0-2.5). In adjusted models, Hispanic/Latino persons with dementia were less likely to receive HBMC (OR = 0.32; 95% CI = 0.11-0.93). Use of HBMC, podiatry, and other home-based clinical care was significantly more likely among those living in residential care facilities, in the Northeast and in metropolitan areas. CONCLUSION:Although almost half of community-dwelling persons with dementia receive home-based clinical care, there is significant variation in utilization based on race/ethnicity and environmental context. Increased understanding as to how these factors impact utilization is necessary to reduce potential inequities in healthcare delivery among the dementia population.

For home care agencies and aides, the death of clients has important, yet often unrecognized, workforce implications. While research demonstrates that client death can cause grief and job insecurity for aides, we currently lack home care agencies' perspectives on this issue and approaches to addressing it. This study uses key informant interviews with leaders from a diverse sample of eight New York City home care agencies to explore facilitators and barriers to agency action. We found that agencies engaged primarily in a range of informal, reactive practices related to client death, and relatively few targeted and proactive efforts to support aides around client death. While leaders generally acknowledged a need for greater aide support, they pointed to a lack of sustainable home care financing and policy resources to fund this. We recommend increased funding to support wages, paid time off, and supportive services, and discuss implications for future research.